About half a million babies are born in California each year, which translates to roughly 1,400 per day. Starting today, every one of those newborns will be tested for a rare genetic disorder that can destroy the nervous system. Their parents can thank a variety of people who pushed for the screening, but perhaps most of all a Vista mother who lost her son to the condition.

The test is quietly being incorporated into the state’s routine screening panel for newborns, which already looks for 80 potential health problems using a few spots of dried blood collected from a baby’s heel before the child leaves the hospital.

While most parents won’t ever know about this new addition, it is expected to deliver a potentially life-saving, early warning to an estimated 100 families per year throughout California. Timely diagnosis and treatment are of the essence for these patients, said Dr. Richard Pan, a pediatrician and state senator from Sacramento who sponsored the screening bill.

“The difference between an early diagnosis through infant screening and a late diagnosis, when symptoms start showing up, could be life and death,” Pan said in a statement.

It is widely recognized that no one pushed harder for the latest expansion to the screening panel than Janis Sherwood, the Vista mother turned public health crusader who has spent the past 13 years spreading information about adrenoleukodystrophy, or ALD, the disorder that took her boy, Sawyer, on Sept. 30, 2003. He was 8 years old.

By the time Sawyer was able to get an accurate diagnosis, it was too late. Sherwood then dedicated her life to giving other families a better shot at beating the disorder.

“It’s just very exciting,” Sherwood said Tuesday about the state’s decision to routinely screen for ALD.

The milestone is the culmination of her determined activism. The outreach campaign started with visits to medical conferences and grew to become a cross-country pilgrimage that took Sherwood to 3,200 children’s hospitals, pediatric offices and other medical facilities in 48 states.

There were also lobbying trips to Sacramento and Washington, D.C., where she and others convinced legislators and administrators to add screening for ALD to California’s required screening panel and to recommend similar action by all other states. Legislation is pending in Congress to make that recommendation a requirement.

Sustaining her advocacy for this long has been tough at times, Sherwood said.

“You have to shut so much down to be able to go out and talk about your dead son every day. It can be really hard, and it does come to a head every now and then. You just kinda let it come and just know that, in your heart of hearts, it’s all in his honor. I know he would be really proud of me,” she said.

ALD affects one in every 20,000 children, mostly boys. Scientists have traced the condition to a specific genetic mutation on the X chromosome that increases the likelihood that fatty acids will build up in the body’s cells. This buildup gradually devastates the insulation around neurons, which carry the body’s electrical messages, and harms the adrenal glands, which are critical organs that help the body regulate blood pressure, burn fat and react to illness and injury.

Around the time a child turns 2, ALD can manifest symptoms that often begin with behavioral and learning problems. These symptoms are often misdiagnosed as attention deficit disorder or hyperactivity.

By the time doctors realize what is really going on, erosion of nerve pathways has become so severe that the condition impairs cognition and basic senses such as vision and hearing. Progression from this stage toward death can be rapid, typically leaving patients bedridden, blind and unable to speak.

If the mutation is spotted early, then it is possible to treat the disorder’s effects.

Physicians can compensate for the reduced adrenal gland output with daily pills containing the hormone cortisol. Magnetic resonance imaging scans of the brain are performed every six months, with the aim of spotting early changes in neurons. A bone marrow transplant can stop the damage if it is performed when the initial signs of trouble appear.

And some clinical trials underway have shown significant progress in editing patients’ own T-cells (part of the body’s immune system) to fix the genetic mutation that causes ALD, Sherwood noted. If ultimately successful, this approach would allow patients to undergo an easier transplant — one that does not require them to take anti-rejection drugs for the rest of their lives.

California’s new screening expansion will be retroactive for all newborns’ blood samples collected since Feb. 16.

Sherwood said although news of an ALD diagnosis will likely be frightening for any baby’s family, she wants other parents to know that piece of knowledge is a gift in the long run.

“Our full intention is to be here to help guide them through the process and make them realize that this is a blessing. This is not a death sentence like it is when you get a late diagnosis,” Sherwood said.

For more information on adrenoleukodystrophy, visit Sherwood’s website at fightald.org.